Health information needs for initial assessments of children-in-care

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by

Cori Denise Thompson B.A, University of Victoria, 1995 B.Sc., University of Victoria, 2005

A Thesis Submitted in Partial Fulfillment of the Requirements for the Degree of

MASTER OF SCIENCE

in the School of Health Information Science

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Health information needs for initial assessments of children-in-care

by

Cori Denise Thompson B.A, University of Victoria, 1995 B.Sc., University of Victoria, 2005

Supervisory Committee

Dr. Francis Lau, Supervisor

School of Health Information Science Mr. Jeremy Berland, Outside Member School of Child and Youth Care

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Abstract

Children and youth in state or statutory care (children-in-care) are at a higher risk of not having their health needs met than the general pediatric population. A literature review found a paucity of evidence on the health information needed for initial assessments of children-in-care in health record information systems in Canada, particularly when compared with information collected in the comparator countries the United States, United Kingdom, and Australia. This qualitative research reviewed six forms currently used in British Columbia (BC) for assessing the health needs of children-in-care, and for planning future health care delivery for these children. The forms were reviewed with social workers, foster parents, and medical care providers to

understand how the forms met their needs for health information for initial assessments when a child first enters care. One researcher conducted 31 interviews with 37 participants —a mixture of social workers, foster parents, and medical care providers allowed for source triangulation— in urban and rural communities using a 19-question, nonvalidated interview tool. NVivo-10 was used to inductively encode participant interviews relying on Pava’s 9-step, nonlinear

sociotechnical systems approach to identify themes and concepts raised by the interviews. The researcher conducted an informal review of relevant Ministry of Children and Family

Development (MCFD) organization documents and method triangulated the results to the interview findings to identify similarities, differences, and gaps. Findings from these two analyses were compared with the literature review findings. The six forms were found to

document most of the required information for typical children-in-care provided the forms were available to the care team and completed in full prior to the initial assessment. Additional forms were used for children-in-care with complex health needs. Key health information included parents’ relevant health and social information, prenatal and birth records, medical and social history of the child, immunization record, whether the child had experienced adverse childhood events, and anything that might remind the child of a stressful situation and cause the child an adverse mental or physical outcome. Complexity in acquiring the needed health information comes from a variety of circumstances. For example, the child may transition in and out of care, parents may be unavailable, and social workers, foster parents, and medical care providers may each change while the child is in care. To overcome information-sharing challenges and

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to support medical care provider participation, an information-sharing framework, and electronic options such as a centralized child-in-care record with secure email capability. Introducing some practices from other jurisdictions, notably a senior medical advisor role and a medical assessment model, might help address process challenges when health information is missing during the initial medical assessment. These resources would help round out MCFD’s existing conceptual child-in-care health-care framework. Together these changes may support social workers, foster parents, and medical care providers to provide care to and plan for children-in-care.

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List of Tables

Table 2-1 Summary of risk factors for health and healthcare for children-in-care………...6

Table 2-2 Common health issues of children in foster care………6

Table 2-3 Status of children in state care assessments for Canada, USA, UK and Australia….. 12

Table 2-4 Paper, electronic and hybrid children-in-care health records………...………15

Table 2-5 Key information suggestions for children-in-care health record……….…….16

Table 3-1 Organization and authority-granting documents……….……28

Table 4-1 Breakdown of participants (interviews) by region………...34

Table 4-2 Breakdown of participants (interviews) by urban or rural site……….34

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List of Figures

Figure 2-1 Sociotechnical contextual diagram……….…….…... 19

Figure 3-1 Presentation order of forms at interviews………...28

Figure 3-2 Research process………...…31

Figure 4-1 Target system: initial removal, placement, and medical assessments………...40

Figure 6-1 Preferred order of forms……….……...….64

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Acknowledgements

There are many individuals and organizations to thank for their support of this research. First, to my participants and their organizations, thank you for sharing your views and experience with me. I hope I have conveyed your professional opinions accurately.

To my supervisory committee—thank you to Francis for academically supervising my thesis and to Jeremy for your commitment to my thesis.

Thank you to Dr. W. Arruda, Dr. A. Laskey, Dr. K. Campbell, Dr. J. Steele, and Karen, Nurse Clinician, for introducing me to, and teaching me about, pediatrics for children in state care, SCAN clinics, and medical homes.

Thank you to Brenda, Vicky, Michele, and Kathy for your support, and thank you to Erdem and Don for yours.

To Jason and my family for their support.

And most importantly, to children and youth who have lived in care—I hope this work is helpful.

This research was partially funded by a Denis and Pat Protti Endowment Fund Student

Enrichment Award (2013) and by the Government of British Columbia (Ministry of Children and Family Development) Pacific Leaders Scholarships for Public Servants.

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Inscription

From a study asking foster children about the experience of coming into care, an 8 or 9-year-old male child comments:

“Moving into care ‘is scary’”

(foster child, Mitchell, Kuczynski, Tubbs, & Ross, 2010, p. 179).

“What these kids need are a medical home and somebody who cares for them, somebody who truly will love them. In other words, someone who will look to their physical, mental, emotional and spiritual health, right. That’s what they need over a long period of time”

(Participant #1, medical care provider).

“I think that electronic medical records are the way of the future, but it is hard work that is what you should know. It is hard work. The work plays hard on the physicians and [electronic medical records] are not as durable as the paper thing because as soon as the computer crashes everything is gone. And that happens very often and your clinic grinds to a halt”

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Chapter 1 – Introduction

This chapter contains the background for the thesis research and report organization.

1.1 Background

Children and youth are considered vulnerable populations whose health needs differ from those of adults and also change as they age (Stanton & Behrman, 2016). Children and youth in

statutory or state1 care (children-in-care)2 are considered even more vulnerable. They have more acute health needs and their risk of not having their health needs met is greater than the general pediatric population’s (Ponti, 2008). Thus, recording and sharing health information is an important aspect of case management for these children-in-care.

In 2008, the Province of British Columbia (BC) introduced a computer system to replace the legacy social sector case management system. The project was a 5-year, social care initiative to tailor a commercial off-the-shelf computer system into a social care case management record. The case management record was for joint use by the Ministry of Social Development & Social Innovation (SDSI) and the Ministry of Children and Family Development (MCFD), and was developed in partnership with the Ministry of Citizen Services and Technology (CITS),3_together with a contracted system integrator and application vendors. The project scope included

replacing technology for MCFD’s child and family services business.4

This social care project provided an opportunity for this thesis research. The purpose of this thesis research was to review the current process of collecting health information for children-in-care used by professionals who provide children-in-care to and plan for children-in-children-in-care. The scope of the research was limited to health information needs for the initial assessment undertaken the first time a child enters state care. This thesis research also assessed gaps and issues, including challenges and barriers, in the process used to collect health information, and asked participants for their opinions on how these might be overcome. The research focused on requirements,

1_{When the government removes a child from his or her parent and brings the child into care this is termed statutory}

or state care. In Canada, the term used for children removed and brought into care is child-in-care or children-in-care. Children- and youth-in-care are individuals 18 years of age and under who are in the government’s children-in-care.

2_{For the purposes of this thesis research, the term children-in-care denotes child-, children-, and youth-in-care.}

3_{The British Columbia Ministry of Citizens’ Services and Technology (CITS) was called the Ministry of}

Technology, Innovation & Citizens' Services (MTICS) in 2016.

4_{BC Gov News. Factsheet: Integrated Case Management project. May 8, 2015. Accessed April 22, 2016. Available}

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including process analysis, in order to understand the business context for the social care project from both technical and social aspects. This research will contribute to the requirements

gathering for software design of a child-in-care record.

1.2 Thesis report organization

The thesis report is organized into eight chapters, references, and appendices. Chapters 1-7 end with a summary of key messages.

Chapter 1 is the introduction providing background for the thesis research and laying out the thesis report structure.

Chapter 2 contains the literature review and summarizes the results from environmental scans of three main topics (1) health-care needs and assessments for children-in-care, (2) child-in-care information systems with a focus on health records, and (3) sociotechnical system (STS) approaches, going in-depth on Pava’s STS approach.

Chapter 3 is the overall study approach. This chapter states the scope, research question, and sub-questions, and describes the method, study sites, participants and recruitment, data sources, and data analysis.

Chapters 4, 5, and 6 report the thesis research findings: research details and initial assessment context, participant interviews, and form usage and analysis. Triangulation is incorporated into the findings.

Chapter 7 discusses the research findings, including implications, key messages, and how the research question has been answered. It provides a conceptual child-in-care health-care

framework and suggests actions for MCFD. This chapter also includes the research limitations, contributions to the body of knowledge, and opportunities for future research.

Chapter 8 concludes the thesis report with a summary of the key messages.

Chapter 1 Key Messages

Children- and youth-in-care are individuals 18 years of age and under who are in state’s or the government’s care.

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Children-in-care are more vulnerable than the general pediatric population, have more acute health needs, and are at a higher risk of not having their health needs met.

From 2008 to 2014, the Government of BC was replacing its social care case management system, which provided the opportunity for this research.

This thesis asks for the health information needed for initial assessments undertaken the first time a child enters care, including challenges and barriers to documenting this information and ways these hurdles might be overcome.

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Chapter 2 – Literature review

This chapter reviews three key topics to identify current evidence, trends, and knowledge gaps in order to justify this thesis research. The three topics are (1) initial assessments and health-care5 needs for children-in-care, (2) health records for children-in-care, and (3) STS approaches. The review of initial child-in-care assessments, health-care needs, and health records is based on academic and grey literature, whereas the review of STS approaches relies solely on academic literature.

2.1 Health-care needs, assessments, and roles

The literature was reviewed to understand the health needs of children-in-care and to understand the current state of assessments, including roles.

2.1.1 Child-in-care health-care needs

Children are considered a vulnerable population and children-in-care are one of the most

vulnerable populations (Simkiss, Stallard, & Thorogood, 2012). Contributing to this vulnerability is children’s reliance on others to advocate on their behalf, and the fact their health needs change as they age (Stanton & Behrman, 2016). There have been changes in how children are viewed with an increasing focus on child health beginning at pregnancy and proceeding through birth and early years, and addressing parenting, abuse, and neglect (Stanton & Behrman, 2016). The United Nations formally declared, in 1989, that children have a right to have their

fundamental needs met, including health care.6 In BC, the government has long held that it has a responsibility to safeguard vulnerable children. It meets this obligation through child welfare agencies that intervene in families by providing services or by removing a child where there is suspected child abuse and/or neglect, collectively referred to as “child maltreatment” (Szilagyi, 2012, p. 498). Alternatively, parents may voluntarily ask a child welfare agency to take their child into care if they are unable to adequately care for their child (Szilagyi, 2012).

Children and youth entering or in state care are more likely to have health needs beyond those of the general pediatric population (Oswald, Heil, & Goldbeck, 2010; Ponti, 2008; Steele & Buchi,

5_{For the purposes of this thesis research, health-care needs include medical, health, and well-being concepts.}

6_{United Nations Convention on the Rights of the Child, November 1989. Accessed April 29, 2016. Available from}

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2008) and are at higher risk of not having their health-care needs met (New South Wales [NSW], 2013; Oswald et al., 2010). According to Szilagyi (2016), children in state care may be defined as a population with special health-care needs due to their history:

Multiple childhood adversities and the receipt of fragmented and inadequate health services before placement into foster care mean that children enter foster care with a high prevalence of chronic medical, mental health, developmental, dental, and educational problems… and so are defined as children with special healthcare needs (p. 228). An environmental scan was conducted to explore current evidence on the health needs of children-in-care in Canada, the United States of America (USA), United Kingdom (UK), and Australia. The health needs of children in statutory or state care7 have been documented for 20 years and are found to be “internationally consistent” between countries (NSW, 2013, p. 40). There is conflicting evidence in the literature as to whether being in care improves health for some children (Forrester, Goodman, Cocker, Binnie, & Jensch, 2009; Szilagyi, 2012).

It is important to understand the larger ecology where children live and grow (Waddell, 2004, p.287) to understand why a child may enter care, including the parents’ ability to parent, as that may have a bearing on the child’s health needs (Simkiss et al., 2012). It is also important to understand the health needs of children as they enter state care in order to place children in foster homes that are able to meet the children’s health needs and, thereby, reduce the risk of placement change to another foster home. Changing placements decreases stability for the children which, in turn, may exacerbate their existing health issues (Rock, Michelson, Thomson, & Day, 2015; Sellick, 2006). For example, a child’s mental health was noted to be strongly associated with placement change (Rock et al., 2015).

The risk factors identified from the literature are consolidated in Table 2-1. Table 2-2

summarizes common health issues for children-in-care and is replicated from Table 38-1 in the Nelson Textbook of Pediatrics (Szilagyi, 2016, p. 228).

7_{The term statutory care is shortened to state care and used interchangeably with children-in-care especially when}

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Table 2-1. Summary of risk factors for health and health-care for children-in-care

Risk Factors Factors Publications

Past history Multiple childhood adversities, fragmented and inadequate

health service prior to entering care

Szilagyi, 2016

Parental Socio-economic status, family breakdown, single parent,

education level, family size, domestic violence, ethnicity (including Aboriginal), age, disability, smoking during pregnancy, mental illness, alcohol misuse, learning difficulties, involvement in crime, residential moves, substance abuse, adverse childhood experiences, ability to parent, teenage or unmarried mothers, no prenatal care

Oswald et al., 2010; Simkiss et al., 2012

Child premature birth, low birthweight, prematurity, disability,

injuries, emergency room visits, parent of a child, homelessness or past homelessness

Oswald et al., 2010; Simkiss et al., 2012; Svoboda, Shaw, Barth, & Bright, 2012; Zlotnik, Tam, & Zerger, 2012

Impact of adversity

Genetic and neurological impact from trauma,8_{impact of}

parental substance abuse

Szilagyi, 2016

Environment Removal from parent, being in care Szilagyi, 2016

Risks Multiple placement changes, fragmented record, fragmented

immunization record, increased instability, insufficient record access, lack of communication between providers including between providers and social workers, lack of medical examinations, limitations of quality of life

Anderson, Vostanis, & Spencer, 2004; NSW, 2013

Funding Funding challenges American Academy of

Pediatrics Committee on Early Childhood, Adoption, and Dependent Care [AAP CECA], 2002; Zlotnik, Wilson, Scribano, Wood, & Noonan, 2015; Szilagyi, 2016

Table 2-2. Common health issues of children in foster care

Issue Description

Chronic medical problems Affect 40-60% of children

Asthma, dermatologic, neurologic, obesity, growth failure, hearing, and vision problems are the most common

Abuse and neglect Over 70% of children have a history of abuse and neglect at entry

into foster care

Monitor at all health visits for abuse or neglect

8_{A. Winter’s slides depicted that stress, exercise, and diet as well as trauma in utero or during childhood can impact}

neurological and biological development by altering methylation of deoxyribonucleic acid (DNA), which changes gene transcription and, therefore, protein expression. This points to the importance of safe, nurturing homes for children (Genome BC, personal communication, May 6, 2016).

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Issue Description

Complex chronic medical problems Involves 10% of children in foster care

Children may be dependent on medical technologies or have multiple disabilities

Mental health concerns Affects 80% of children over 4 years of age

Result of childhood trauma and adversity

Most common diagnoses are adjustment disorder, posttraumatic stress disorder, attention-deficit/hyperactivity disorder,

oppositional defiant disorder, and conduct disorder Externalizing problems are more likely to result in therapy

Developmental problems 60% of children under 5 years of age have at least 1 documented

delay

Commonly affect communication, cognition, problem-solving, and personal-social domains

Dental problems 35% of children have significant dental disease

Adolescent health issues High rates of sexually transmitted infections, high-risk

behaviours, and substance abuse

Educational problems Half of special education placements relate to behavioural or

emotional issues, not cognitive

Only 32% of adolescents eventually graduate from high school; 32% obtain a General Equivalency Diploma

Family relationship problems 100% of children have family relationship problems

Replicated from Szilagyi (2016, p. 228, Table 38-1).

The top three health issues for children-in-care are “mental health as the single most important need” followed by developmental delays and behavioural, emotional, or cognitive problems affecting education (Szilagyi, 2012, pp. 505-506). Szilagyi (2016) also states “[t]he greatest single healthcare need of [children-in-care] is for high-quality, evidence-based mental health services to address the impacts of prior and ongoing trauma, loss, and unpredictability” (p. 228). For children with special needs, typical guidelines for a child that age should be followed with specific guidelines added according to the child’s special needs with additional screening for abuse. Children with a medical or behavioural issue “require typical prevention, as well as more specific counseling related to their disability” (Turk, 2016, p. 3413).Szilagyi’s Chapter 38, Foster and Kinship Care, also includes tables describing medical homes for children-in-care (p. 229, Table 38-2) and anticipatory guidelines for foster parents (p.229, Table 38-3).

2.1.2 Children-in-care assessments

This section summarizes the current state of initial assessments for children-in-care. This is followed by a comparison of assessments in Canada with assessments in the USA, UK, and Australia.

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The initial assessment of a child brought into state care provides an opportunity to identify and initiate treatment of any unmet health need and to mitigate the impact of any health problems (Webster, Temple-Smith, & Smith, 2012). There are three types of initial assessments for children-in-care (1) assessment whether to bring the child into care, (2) assessment to place the child in an appropriate foster home, and (3) health and medical assessment. Similar to most countries, Canada is a signatory to the United Nations Convention on the Rights of the Child (UN CRC).9_{Article 24 of the UN CRC states “children have the right to good quality health} care–the best health care possible” (United Nations Convention on the Rights of the Child [UN CRC], 1989).

When assessing whether to remove a child from his or her family, in alignment with UN CRC Articles 4, 7(1), 9, 18 and 19, the provincial legislation, the Child, Family and Community

Service Act, under Guiding Principles, Section 2(b) states “a family is the preferred environment

for the care and upbringing of children and the responsibility for the protection of children rests primarily with the parents.” Articles 34 and 39 state that children have the right to be protected from and receive help against abuse and neglect. The BC legislation requires that, if a child is in need of protection, the least disruptive measure that is available should be used. That is, removal of a child from his or her parents’ care should always be the last option considered, and any such separation should be as brief as possible. The child welfare agency social worker conducts the assessment of whether to remove and bring a child into care as well as the assessment to decide on the foster care placement.

The BC legislation aligns with additional UN CRC articles. For example, the placement decision process should be as inclusive of the child, biological parents, and collaterals10 as possible (Articles 12, 13, and 14), and should consider the safety and well-being of the child as well as the child’s unique identity and any complex health-care needs (Articles 8, 20, 21, 23, 24 and 25). UN CRC Article 23(4) speaks to “the exchange of appropriate information in the field of

preventative health care and of medical, psychological and functional treatment of disabled children.” Article 24(b) states that the States must “ensure the provision of necessary medical

9_{Canada was a signing party to the United Nations 1989 Convention on the Rights of the Child (UN CRC). Accessed}

April 18, 2016. Available from: http://www.ohchr.org/EN/ProfessionalInterest/Pages/CRC.aspx

10_{The term collaterals refers to any persons who may have information about the child and who are not the child’s}

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assistance and health care to all children with emphasis on the development of primary health care.” Article 25 states that a child in a placement has a right to have his or her treatment and placement reviewed, and Article 30 states that an indigenous child has a right “to enjoy his or her own culture… religion… and… language.” The MCFD policies support these rights of children for children-in-care.

Children entering state care need to be screened and assessed for medical, psychosocial, and mental health, and for developmental status and dental care needs (AAP CECA, 2002; NSW, 2013; Steele & Buchi, 2008). Depending on the age and gender of the child, the child should also be assessed for pregnancy or, if the child is a parent, for any parenting concerns (Svoboda et al., 2012). These factors might be included in the foster home placement assessment and in the medical assessment to provide recommendations to the social worker and foster parent to meet the child’s needs.

In a Canadian context, neither the Canadian Paediatric Society (CPS) nor the British Columbia Pediatric Society (BCPS) appear to offer a national or provincial assessment framework, respectively, or guidelines on health care for children coming into or already in care (Ponti, 2008). However, the CPS issued a position statement for the health supervision of children-in-care (Ponti, 2008), and publishes a guideline and many practice points on health issues that research shows may affect children-in-care. The CPS takes the position that health records should be maintained in partnership with the child welfare agency (Ponti, 2008).

The CPS’s position statement (Ponti, 2008) describes the first contact a physician has with a child-in-care as an opportunity to identify and address any health needs for the child. The initial medical assessment upon entry into foster care should include a physical examination and screen for acute illness, infection, pregnancy (if appropriate), chronic medical conditions, and

medication needs. Screening should also be done for significant developmental delays or mental health disorders, and blood tests ordered as appropriate to screen for such conditions as anemia, lead toxicity, HIV, hepatitis B and C (Ponti, 2008). The initial screen should be followed by a fuller assessment to provide time to review the medical history, immunizations, results of the complete physical and the lab test, and to determine the need for referrals including dental, mental health, developmental, and psychoeducational assessments as appropriate.

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The CPS position statement adheres to the American Academy of Pediatrics (AAP) and Child Welfare League of America (CWLA) guidelines recommending that the initial visit—where background information may be missing—focus on screening and treating obvious health conditions. The American guidelines state that a comprehensive medical assessment, including monitoring dental care, should follow within 30 days of the initial screening. Similarly, after the initial screening and follow-up examination of children-in-care, the CPS directs physicians to conduct routine assessments for development, mental health, dental health, and sexually-transmitted infections. A summary of the CPS recommendations is found in Appendix A. Further, although the CPS offers few assessment guidelines11 for children-in-care, CPS has tagged several practice points as child maltreatment. These posts, many of which were reaffirmed February 1, 2016, include:

 fetal alcohol syndrome (Canadian Paediatric Society, First Nations, Inuit and Métis Health Committee, 2002);

 pediatric model for all children and youth (Gauthier, Issenman, & Wilson, 2009);  shaken baby syndrome (Canadian Paediatric Society, Child and Youth Maltreatment

Section, 2001);

 impact from parents’ divorce on children’s and youth’s mental health (Clark, 2013); and  medical assessment of bruising for maltreatment (Ward, M.G.K., Ornstein, A., Niec, A.

& Murray, C.L., 2013).

Ponti (2008) also states that service redesign is needed to better meet the needs of children-in-care, including children with special needs such as those living with HIV or AIDS. The CPS also advocates for dental care and lists child-in-care-specific dental tariffs and coverage (Rowan-Legg, 2013). Canada also has specialized clinics called suspected child abuse and neglect (SCAN) clinics that conduct comprehensive assessments for children and youth referred to them by the child welfare agency, family physician, or specialist. The clinics usually conduct a one-time assessment with report and referrals. Coordinating follow-up is delegated to the family

11_{CPS has a guideline for shaken baby syndrome: Canadian Pediatric Society. (2007). Multidisciplinary Guidelines}

on the Identification, Investigation and Management of Suspected Abuse Head Trauma. Ottawa, Canada: CPS.

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physician, pediatrician, or child welfare agency social worker (Hlady & Allchurch, 2015; The Hospital for Sick Children, 2016).

To compare Canada’s assessment approach for children entering and in care with other jurisdictions, an exploratory scan was conducted of the USA, UK, and Australia child welfare systems. These three comparison jurisdictions implemented children-in-state-care assessment structures between 2000 and 2013. From the scan, the approaches to child welfare initial assessments appear to range from being combined with the health or medical assessment provided by a medical care provider to being a distinct process. Further, depending on the jurisdiction, there was either an initial assessment followed by a more comprehensive

assessment, or one full assessment. There was also an instance of a jurisdiction changing from two assessments—an initial and then second fuller assessments—to one full assessment. The literature stated some jurisdictions provide financial incentives or special billing rates to encourage medical care providers to take on children-in-care as patients to compensate for assessments that may take longer than for a child living with his or her parents (United States Government Accountability Office [GAO], 2009; Webster, 2012). However, there were insufficient details to include financial incentives in the comparison table.

Table 2-3 summarizes the findings of the environmental scan comparing the three jurisdictions to Canada. It is important to note that all of these jurisdictions operate in a federal arrangement where local, state, provincial, or semi-autonomous areas operate the child welfare systems; therefore, these national comparisons are suggestive rather than exact.

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Table 2-3. Status of children in state care assessments for Canada, USA, UK and Australia

Country/ Criteria

Canada USA UK12 _Australia13

(New South Wales) Legislation/

National Framework14

Unknown State practices rely

on American Academy of

Pediatrics guidelines and Medicaid

requirements15

Framework for the Assessment of Children in Need and their Families

National Clinical Framework for Children and Young People in Out-of-Home Care Implementation Year Unknown 200916 (federal legislation) 2000 (national framework) 2011 (national framework)

Governing body Unknown Administration for

Children and Families (Federal oversight and legislation, with State-level implementation)

Social care group within Department of Health

Commonwealth Department of Health and Ageing

Guidelines Unknown – Canadian Pediatric Society posts practice point publications, guideline American Academy of Pediatrics, Medicaid

Framework Framework, Clinical

Practice Guidelines (NSW, 2013)

Basis Unknown – follows

AAP; reported study on Looking After Children Assessment and Action Record (Kufeldt et al., 2006) American Academy of Pediatrics, Medicaid Looking After Children Assessment and Action Records

Looking After Children Assessment and Action Records

Terminology (children in state care) In-care; foster care Out-of-home care; foster care Child in need (might not be in state care) Out-of-home care (includes kinship, residential) Assessment content Unknown – Canadian Pediatric Society posts practice point documents, guideline Medical/health assessments are distinct from social worker assessments

Social worker and health assessments appear combined

Medical/health assessments are distinct from social worker assessments

12_{Pithouse (2009) advises that the Framework is not intended to replace child welfare investigative assessments nor}

specialist and statutory assessments; it is a shared record for “child’s universal services in health, education, the voluntary and private sectors” (p. 600). The Framework is included for UK as a comparison.

13_{Australia’s findings are based on North South Wales operationalization of Australia’s National Clinical}

Assessment Framework for Children and Young People in Out-of-Home-Care (NSW, 2013).

14_{In Canada, child welfare legislation and funding is provincial/territorial. This structure may impact development}

of a federal or national approach.

15_{American Academy of Pediatrics. Healthy Foster Care America. Fostering Health. Accessed April 26, 2016.}

Available from

https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/healthy-foster-care-america/Pages/Fostering-Health.aspx.

16_{Federal legislation. Fostering Connections and Promoting Adoptions Act. P.L. 110-351, 2009, as cited in Szilagyi,}

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Country/ Criteria

Canada USA UK12 _Australia13

(New South Wales) Assessments

structures

Unknown – follows AAP guidelines; Canadian Pediatric Society has posted many practice points/position statements/guideline Specialized clinics for abuse and neglect with comprehensive assessments, and recommendations; and CPS recommendations (Ponti, 2008) Two (2) – initial screening within 24 hours to 7 days (optional by state – alternate is to address urgent health needs such as evidence of abuse or neglect while awaiting well-child exam), general physical or well-child exam within 30 days, followed by regular exams as per AAP/State Medicaid schedule Three (3) – decision (within 1 working day), initial assessment (within 7 working days), optional core assessment (within 35 working days). Each of the four nations (England, Ireland, Scotland, Wales) may implement as they wish. Range from one assessment to two assessments, to continuous

assessments * services are put in place while assessments are in progress to avoid wait times Three (3) – primary health screening within 30 days, comprehensive assessment and create health plan within 90 days, targeted service intervention as needed, then periodic review and assessment (includes routine schedule – every 6 months under 5 years old; annually for 5 and over); specialized clinic with full assessment and referrals

Defines

interagency roles

Unknown Yes Yes Yes

Indicators reported at national level (recommendation for indicators – Canadian Institute for Health Information)17 Yes (collected by Administration for Children and Families) Yes (collected by National Society for the Prevention of Cruelty to Children)

Yes (case file audit data by Children’s Guardian)

Literature Hlady & Allchurch, 2015; Kufeldt, McGilligan, Klein, & Rideout, 2006; Ponti, 2008. (representative literature)

GAO, 2009. Gray, 2001; Jutte, et

al., 2015; United Kingdom Department of Health [UK DoH], 2000.

Chambers, Saunders, New, Williams, & Stachurska, 2010; Kertesz, 2012; New South Wales Children’s Guardian,18_n.d.; NSW, 2013; Webster et al., 2012.

Based on the review of the jurisdictions’ assessment processes, all assessments included a health assessment but, as summarized in Table 2-3, the literature also showed variation. Some

jurisdictions appear to have a joint social worker-medical assessment process while others have structured a solely medical assessment process. The latter process provided greater detail on the

17_{Canadian Institute for Health Information [CIHI], 2013.}

18_{Australia’s Children’s Guardian is an oversight body for the child welfare agencies and conducts case file audits.}

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initial screening, fuller assessment overall, and follow-up that may include a health-care plan, referrals, and/or routine check-ups. As aforementioned, although there was some indication of incentives and payment schedules in the literature (GAO, 2009; Webster, 2012, [see Appendix B]), there were insufficient details to enable an in-depth understanding of incentives and

payments for assessments of children-in-care. Further study comparing incentives for physicians to take on other types of patients with complex care needs is recommended to provide a better understanding of how fee schedules might be structured to factor in workload considerations. Canada (Ponti, 2008) and the three comparison jurisdictions addressed professional roles in assessment. Professional roles were also described in the literature reviewed. The responsibility for assessments falls between the medical care provider and the child welfare agency social worker; responsibility may also be shared among different health care providers (MacMillan, 2013). Deliberate collaboration is required to improve health for children in state care (Zlotnik et al., 2015). The health care provider should discuss the child-in-care’s health care directly with both the social worker and the foster parent (AAP CECA, 2002). For example, AAP notes that “[h]ealth care management is the responsibility of the child welfare agency, but it is a function that requires medical expertise” (American Academy of Pediatrics [AAP], 2005, p.78). Zlotnik (2015) suggests embedding medical directors and nurses in child welfare agencies. A key consideration for the roles involved in managing health care for children-in-care is the blurring of roles between “authority, responsibility, and accountability” (Szilagyi, 2012, p.499) with respect to: biological parents, who retain guardianship until an order of termination of parental rights is granted; foster parents, who parent the child day-to-day; and social workers, who ensure the care of the child. All three roles have a duty to the courts (Szilagyi, 2012).

2.2 Child-in-care health records

The foster care system is a simple concept but complex in practice (Szilagyi, 2012), and

technology adds further complexity (Drummond, Ferranti, Lehmann, & Lighter, 2009). Szilagyi (2015) discusses the issues of accessing health information for an assessment when a child enters state care. The issues include incomplete or missing records, inability to obtain information from birth parents, frequent change in care providers, little previous contact with the health-care system, and the need for consents to obtain existing information (Szilagyi, Rosen, Rubin, & Zlotnik, 2015). Further, there are gaps in the data available for secondary analysis. Such analysis

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might reveal links between health needs, risk factors, and the outcome of interventions, and might provide evidence of effective treatment. These results are needed to inform policy and practice.

AAP (2002, p. 539) states that “computerized health information systems” for foster children are being developed for access by both practitioners and child welfare agencies. Paper, electronic, and hybrid health records tailored to children in state care exist (Thompson & Lau, 2013). Hill et al. (2002) provide a history of assessment tools prior to 1995 at which time the Looking After Children booklets were introduced. Hill et al. describe moving from an annual examination of children-in-care, with the focus on screening for infections to protect the foster families, to the British Association for Adoption and Fostering (BAAF) booklet that introduced a more medical approach to assessments but with limited functional and lifestyle assessments.

An environmental scan was conducted on health records for children-in-care. Table 2-4 lists the records that were reported. The literature also suggested key information in child-in-care health records. These are listed in Table 2-5.

Table 2-4. Paper, electronic, and hybrid children-in-care health records

No. Record Country (Author, year)

1 Looking After Children – Assessment and Action Records Canada, (Kufeldt et al., 2006); UK,

(Bundle, 2001; Kerslake, 1998); and Australia, (Champion & Wise, 2009)

2 British Association for Adoption and Fostering (BAAF) Health

Record Booklets

UK, (Hunter, McCartney, Fleming, & Guy, 2008)

3 Joint Professional Records UK, (Knowles et al., 1998)

4 Health and Education Passport for Children in out of home care United States, (Lindsay, Chadwick,

Landsverk, & Pierce, 1993)

5 Child Health System, a social worker system for health information

and services

United States, (Smart, Russell, & Custodio, 1998)

6 Blue Book to capture health assessments and treatments for children

ages 0 to 5

Australia, (Children’s Guardian, n.d.)

7 medical history profile or passport generated from Medicaid claims

and encounter data (no real time data entry)

United States, (Chisolm, Scribano, Purnell, & Kelleher, 2009)

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Table 2-5. Key information suggestions for children-in-care health record19

No. Data Literature

1 Medical history profile report generated from Medicaid and

encounter data: ambulatory care, diagnoses, providers seen, medications… and inpatient admissions

Chisolm et al., 2009, p. 1

2 Recommended key information types for a medical passport:

medical problems, allergies, chronic medications, and

immunization data as well as basic social service and family history

AAP CECA, 2002, p.529

3 Genogram – to map out the child’s network, culture Altshuler, 1999, p.777

4 Passport template (paper based): child demographics and biological

parents’ names; emergency contacts; specialists and care providers including agencies; birth information; surgeries, allergies and hospital admissions; chronic problems; chronic medications and other medications; tests and x-rays; visit summary including information on any referral and ending with “my next appointment” date; and immunizations

McDavid, 2015, p.1336-1346

5 Common Assessment Framework (CAF – Signs of Wellbeing)

form: ethnicity, identity, how the child feels, overall wellbeing self-rating scale;

Appendix 1: includes referrals to services (developmental, mental health, speech and language)

CAF, n.d.

6 Core Functionality in Pediatric Electronic Health Records, Pediatric

Health Level (HL) 7 data set, specific considerations for foster children including: identity, vulnerability, privacy and confidentiality, and consent considerations for adolescents.

Dufendach et al., 2015

The data types listed in Table 2-5 do not appear consistent nor do they appear comprehensive when compared to data elements for a child personal health record recommended by Zuckerman & Kim (2009). This lack of consistency suggests more research is needed to confirm the key information types that the care team need when providing care to and planning for children-in-care.

The environmental scan also provided evidence from studies of social care records in Canada and four jurisdictions: USA (California), UK, Australia, and Finland. Each jurisdiction provided an evaluation or described issues with the usage of its children-in-care record detailing how the information system did not fit social work practice. This was despite the fact the initial intent of

19_{For Table 2-5, only a sample of literature was reviewed; therefore, it is likely the list is not exhaustive. For}

example, from participant interviews, information on pre-existing treatment protocols, equipment, physiotherapy, occupational therapy, and rehabilitation was needed when a child entered care. Further, not all literature classified recommendations as information needs. For example, Williams, Mackintosh, Bateman, Holland, Rushworth, Brooks & Geddes (2014) advocate for including dental screening and any referral as part of the initial medical assessment process.

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all the records was to improve outcomes for children-in-care and other children for whom the information systems were used (Huuskonen & Vakkari, 2013; Kufeldt et al, 2006; Mitchell & Sloper, 2008; Pithouse, Hall, Peckover, & White, 2009; Shaw et al., 2009). Many of the issues and concerns noted might be classified as sociotechnical issues, evoking the tension between technical artifacts and social elements, as well as conflicting organizational goals. For example, the systems were found to be too prescriptive, changed the professional working relationship between the social worker and supervisor, and reduced direct time with clients. Some social workers developed workarounds to use the record. The table in Appendix C compares these records by jurisdiction, including strengths, limitations, and whether the literature provided details on initial assessments. However, as Appendix C only provides highlights from the environmental scan, the researcher recommends a systematic review of academic and grey literature to fully itemize and classify requirements, to list design, implementation, and support considerations, and to capture benefits identified in the studies as a first step toward designing a child-in-care electronic health record systems.

2.3 Sociotechnical systems (STS) approaches

STS approaches have been used for over 65 years (Fox, 1995; Mumford, 2006) with a lapse in the 1970s and 1980s (Mumford, 2006; Pava, 1986). They “reflect[] the goal of integrating the social requirements of people doing the work with the technical requirements needed to keep the work systems viable with regard to their environments” (Fox, 1995, p.92). The technical system includes “the materials, machines, territory, and processes used to convert inputs to outputs” (Fox, 1995, p.93). The social system is the social structure “comprised of organizational roles” (Fox, 1995, p.93). The social and technical systems “must be considered interdependently, because arrangements that are optimal for one may not be optimal for the other, and tradeoffs are often required” (Fox, 1995, p.92). An STS approach enables optimization through trade-offs between the technical and the social systems (Fox, 1995) to ensure that the software meets the end users’ needs while enabling the provision of services that are congruent with the external environment and that offer a competitive advantage (Katsioloudes, 1996; Pava, 1986). Thus, “there is a need for both dual focus and joint optimization” (Fox, 1995, p 91).

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Iivari & Hirschheim (1996) list considerations for information systems design following an STS approach:

 the priority of the design has technical and organizational/social systems as equal partners;

 the causes of implementation problems are due to a misfit between the technical and organizational/social subsystems;

 the critical considerations for implementation success include fit between these two systems;

 the developmental strategy looks at technical and social options;  the implementation strategy is normative-educative;20_and  the role of the change agent is as a facilitator.

2.3.1 Overview of sociotechnical systems approaches

There are many STS approaches (Aarts & Gorman, 2007). A review of STS studies identified the following themes: general overview, philosophy and style comparisons, approaches, theory, analysis, design principles, system and process design and re-design, modelling, development, policy development, post-implementation analysis, knowledge translation, and benefits

realization. The corresponding authors for these STS approaches are listed in Appendix D. Of note, Eason from the Tavistock Institute blends ergonomics and behaviour with an STS approach. Health informaticians focusing on clinical information systems include Aarts, Berg, Coiera, Lau, and Sittig.

In determining the best fit for this thesis research, Keating’s (2001) and Sittig’s and Singh’s (2010) works were considered. While Sittig and Singh have developed an 8-dimension sociotechnical framework for analysis, their framework seemed to go beyond requirements gathering. It was also not detailed enough to provide a framework to gather, organize, and analyze the participants’ information needs into requirements. In contrast, although Keating’s 2001 paper operationalizes Pava (Pava, 1986), Keating’s paper focuses on process re-design. Accordingly, Pava’s approach (1986) was found to be the best fit. The concepts and methods in Pava’s work were at the right level of detail to enable structuring the research to start at systems

20_{Normative-educative refers to implementing the system in a way that supports carrying out normal workflow}

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analysis, moving through to gathering and analyzing requirements. Further, Pava’s work, supported by Fok et al.’s (1987) analysis of Pava’s approach, provided sufficient description to enable formulating a framework to organize the research findings. This choice is validated by the use of Pava’s approach in Lau et al. (1998) and Wastell & White (2014a). Pava’s STS approach is discussed in more detail in Section 2.3.2.

2.3.2 Pava’s concepts and methods for STS design

An STS framework enables alignment between the social organization, its technology, and the external environment (Pava, 1986). Figure 2-1 was derived from the description in Pava and updated following the revised literature review and findings analysis to include core business or

context understanding and process details. Figure 2-1 depicts the relationships between the

systems in the STS framework, including the external environment. The overall goal is joint optimization between the technical artifacts and social elements21 of an organization while the organization continues to meet evolving external demands to stay competitive in its external environment (Fok et al., 1987; Pava, 1986).

In Figure 2-1, Pava’s model has been modified; context understanding and process details are included under outputs. These dimensions are included to emphasize that it is essential to have a

21_{To aid in differentiating between technical and social aspects, the terms technical artifacts and social elements are}

used in this research.

Figure 2-1. Sociotechnical contextual diagram

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clear understanding of the core business as part of gathering requirements. Understanding the business context and articulating the process details are key to ensuring that the requirements fit the core business, that they inform any needed changes to existing processes and roles, and that any tool designed from the requirements fits the business needs.

Fok et al. (1987) describe Pava’s (1986) approach, in its details, as being similar to Trist’s 9-step approach (Trist, 1971, as cited in Fok et al., 1987). Pava adds three main concepts (1) coalitions and reticular organizations, (2) deliberations versus decisions, and (3) blurring of roles. In addition, Pava provides alternatives for steps 3 and 4 for analyzing nonlinear tasks. The

substitution of “variation analysis” with “deliberations and discretionary coalitions” reflects the multiple and complex conversion processes involved and the highly trained workers who carry out the tasks (Fok et al., 1987, p. 327). With the “[information] conversion process nonlinear, complex, uncertain, and disjoint” (Fok et al., 1987, p.327), and the workers all highly trained specialists, the traditional “linear” STS approach does not fit (Pava, 1986, p.203). Variances or differing characteristics are important to identify as they may impact process outcomes

(Courtney, Flynn, & Beaupré, 2013).

There are nine steps in the traditional STS model (Fok et al., 1987, p. 324). The nine steps listed below include these traditional steps and Pava’s (1986) alternatives (in italics) for Step 3 and Step 4 to enable analysis of nonlinear systems. Combined, these steps form the STS framework (STS approach) for this thesis research. The nine steps are:

1. Identify the target system and its environment

2. Identify unit operations

3. Discover key variances22 and their interrelations (nonlinear alternate: discover

deliberation patterns)

4. Create a table of variance control (nonlinear alternate: identify discretionary coalitions) 5. Investigate social systems members’ perceptions of their roles and constraints

6. Consider neighbouring systems

7. Analyze boundary-crossing systems

22_{Variances, or different characteristics, include those of system functionality, pathway options, people, places, and}

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8. Place the target system and its immediate neighbours in the general management system

of the organization

9. Design proposals for the target or neighbouring systems

In summary, the unit operation is the main function under study. The unit operation resides within the target system. The neighbouring systems are systems that share information with the target system and into which people may blur or be in other roles. The unit operation, target system, and neighbouring systems each have their own technical artifacts and social elements. Technical artifacts may include governing statutes, authorities, regulations, policies, job descriptions, forms, information systems, deliberations, and decisions (Fok et al., 1987; Fox, 1995; Pava, 1986). Social elements include the people (Fok et al., 1987; Fox, 1995), that is reticular organizations, coalitions, training, education, and blurring of roles (Pava, 1986). Roles as job descriptions are technical; however, an individual’s training, education, and community place in society are social. An individual may change roles within a system or when passing between boundaries into another system (e.g., Unit: foster parent, Target: behavioural consultant, Neighbouring: biological and adoptive parent). In Figure 2-1 the boundaries are dashed as information may be shared both within a bounded area as well as between bounded areas where the bounded areas are the unit operation, target system, neighbouring systems, and external environment. The unit operation is initiated when there is a need for gathering, processing, and transforming information into an output (Fok et al., 1987; Pava, 1986). For nonlinear processes, a reticular organization23 works together in the unit operation. The authority shifts between the roles as the operation is carried out through tasks (Pava, 1986). Key STS terms relied on for this thesis research are defined in Appendix D.

2.4 Literature review summary

Chapter 2 explored the current state of knowledge, assessments, and knowledge gaps about children-in-care health needs in the literature. The risks and health needs for children-in-care were discussed, and the assessment processes, including roles, were compared between Canada and similar jurisdictions. Next, the literature on children-in-care health record systems from different jurisdictions was reviewed to understand the current state—what works and what did

23_{The organization is reticular as the roles or personnel are from different formal organizations or agencies and join}

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not work—in order to provide guidance and considerations when gathering requirements. Last, drawing on the literature, an argument for relying on Pava’s STS approach to organize the thesis research findings was made. This choice aligns with work in the UK that advocates for an STS approach and core principles for social care systems design (Gillingham, 2014b; Wastell & White, 2014a; White, Hall, & Peckover, 2009).

2.5 Motivations and rationale for this study

From the literature, there appears to be a paucity of evidence on initial assessment processes for children-in-care in Canada and, specifically, health or medical assessments in children-in-care health record applications. STS approaches have been applied to social care information system development in the UK (Wastell &White, 2014a). From the literature reviewed, it is unknown if STS approaches have been applied to social care information systems in Canada. Academic studies on care health records pointed towards continued development of children-in-care health records as a tool to improve health outcomes for children-in-children-in-care (Thompson & Lau, 2013). Study of this domain is supported by Dufendach et al. (2015) who state that further empirical research in health-care records and foster care “for what works” is warranted (p. 56). The literature reviewed does not appear to detail the process by which health information is gathered, used, created, and disclosed for initial assessments when a child first enters state care. The literature also suggests a gap between social care information and communication systems and an understanding of what information is needed by social workers, foster parents, and medical care providers to support their workflows in the initial assessments of a child entering state care for the first time. Last, from Table 2-3 - Status of children in state care assessments for

Canada, USA, UK and Australia, Canada does not appear to have a national or provincial

framework for children-in-care medical assessments although there is direction to adhere to the AAP schedule (Ponti, 2008).

This thesis research will study the existing MCFD child-in-care health-care framework to understand the current state, needs, and gaps. The framework will be derived through an informal review of organization documents and substantiated through interviews with

participants in three key roles: social workers, foster parents, and medical care providers. The research findings should enable a better understanding of the MCFD conceptual child-in-care health-care framework, together with any challenges, barriers, or gaps and ways these might be

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overcome. The technical system and social system might be better understood through this thesis research by explaining the core business for context and processes to develop requirements for a child-in-care health record.

Chapter 2 Key Messages

Based on 20 years of research, the health needs of children-in-care are internationally consistent (NSW, 2013).

The literature identifies the three top health needs for children-in-care as mental health, developmental delays, and behavioural, emotional, or cognitive problems affecting education. The literature also identifies mental health services as the most important health-care service to help address past trauma and inconsistent care for children-in-care.

The first time a child enters care provides an opportunity to assess the child for any unmet health needs.

The USA, UK, and Australia assessment models reviewed for initial health assessments range from one assessment to three with additional follow-up, and from purely medical to a

combination of social work and medical.

Paper, electronic, and hybrid health records tailored to children-in-care exist; however, the data elements identified for a child-in-care health record are not complete.

An STS approach is appropriate for social care systems research. Pava’s 9-step sociotechnical model (Figure 2-1), as modified, was found to be the best fit for organizing the findings from this research.

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Chapter 3 – Research approach

This chapter states the research question and describes the method, research design, interview sites, participants and recruitment, data sources, and data analysis.

3.1 Research question

This thesis research studied the health information needs of social workers, caregivers,24 and medical care providers for the three initial assessments (1) when a social worker is removing and bringing a child into care, (2) when the social worker, resource worker, and foster parent are deciding on a placement,25 and (3) when the child is taken to the medical care provider for an initial medical assessment. Specifically, the research question asks:

What health information do social workers, foster parents, and medical care providers need to provide care to and plan for a child-in-care during initial assessments? That is:

• What health information is known about the child at the point of initial intake? • What health information about the child-in-care is required at the initial intake?26 • What health information about the child-in-care is required for assessments?

• Are there key information types?

• How is the information collected, recorded, updated, and maintained?

• Who collects and records each specific piece of information?

• Are there challenges in gathering the information?

• If there are challenges, how could these challenges be overcome?

It is hoped that answering these questions will provide a better understanding of the health information needs for the initial assessments when a child enters state care for the first time.

24_{The term foster parent will be used in place of caregiver from this point forward.}

25_{The term placement refers to the home the child is placed in. There are three types of placements: foster homes,}

group homes, and residential homes. This thesis research focused only on foster homes as the placement type.

26_{The term intake is the social worker’s process to bring a child into MCFD’s care although it may be just the}

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3.2 Method

This thesis research used a qualitative research approach with an STS approach to interpret the findings (Niazkhani, Pirnejad, Aarts, Adams, & Bal, 2011). Denzin & Lincoln (2011) describe qualitative research as:

“turn[ing] the world into a series of representations, including field notes, interviews, conversations, photographs, recordings, and memos to the self […]. [Q]ualitative

researchers study things in their natural settings, attempting to make sense of or interpret phenomena in terms of the meanings people bring to them” (p. 3).

A qualitative approach was appropriate as the thesis research was exploratory in nature. This thesis research sought to understand the business context and the processes, and challenges and barriers in their current state, both as formally stated in organization documents and as described by the professionals doing the work. The goal was to generate new knowledge. Quantitative or mixed methods would not fit this thesis research as there was no child-in-care health record being implemented as part of this research that would have allowed for pre- and

post-intervention data comparison. Further, in-person interviews enabled the researcher to understand the participants and children-in-care in their environment; a survey would not have provided an equivalent richness or depth of understanding.

The STS approach for this thesis research was based on Pava’s 9-step STS approach (1986) reviewed in detail in Chapter 2 - Literature Review, Section 2.3.2. The nine steps are (1) identify the target system and its environment, (2) identify the unit operations, (3) consider differences and how they fit together, and deliberation patterns, (4) create a table of differences and identify teams, (5) ask participants about roles and constraints, (6) consider neighbouring systems, (7) analyze systems that cross boundaries, (8) situate target and neighbouring systems, and (9) design proposals for the target or neighbouring systems. An STS approach identifies the

technical artifacts and social elements that work together in a system to provide a defined output. The technical artifacts for this thesis research are legislation, policies, procedures, processes, and tools, including information technology tools. The social elements are brought to the system by people who fill the roles that do the work, or are subjects and benefit from the work. A person may both fill a role and benefit from the work done or information transformed in a system. The unit operation under study is the health information needed for initial assessments of

Health information needs for initial assessments of children-in-care

Supervisory Committee

Abstract

Table of Contents

List of Tables

List of Figures

Acknowledgements

Inscription

Chapter 1 – Introduction

Chapter 2 – Literature review

Chapter 3 – Research approach